Hydrocephalus

Hi K.,

My name is T.. My son Sam has hydrocephalus, He was born very early and had his first shunt placed at around 5 weeks.
He has since had many revisions and placement of a second shunt. He is an amazing child!! You are probably really scared & have lots of questions. If you would like to contact me my phone # is ###-###-####. There is also a support group in New Jersey at JFK Hospital. I look foward to hearing from you!

Good Luck!
T.

My son was diagnosed with Chiari Malformation when he was 5...he did not develop hydrocephalus but has syrinx along his spine. It's not exactly the same, but anything neurological is scary, especially when you're talking surgery and you read anything on the internet. My advice would be to limit your internet searches and get a second opinion before surgery. We absolutely loved Dr. Neil Feldstein at Morgan Stanley. The hospital staff could not have been more accomodating and caring. God bless your little girl and your family.

I can only imagine what you are going through, what a shocking, upsetting thing. All I can offer is that we just studied this is school, nursing school. The procedure is pretty straight forward, considering there aren't any unknown complications- you didn't mention so I am not sure. However they typically place a shunt in the spinal cord leading the excess fluid down the spine where it can safely disperse.
I wish you luck and strength in this difficult time.

Hi K., Many prayers for you and your little girl. The medical field knows so much about this condition, I'm sure they can help your baby. Yes it is good to know more but do not get yourself upset. Just love your baby and get her to the best doctors you can. Blessings, Grandma Mary

Sorry you have to go through this. It must be so scary. That said, we have friends who have a 21 year old daughter who was diagnosed with that condition at a very young age too. She has had several shunts over the years as she's grown. For the most part, she's done very well. She's a beautiful, smart lovely young lady who just last year won NJ's Christian American Idol contest. She sang on stage at a Christian concert my sister attended and there wasn't a dry eye in the house. She's the type of child I hope my daughter turns into when she becomes a young adult. It's hasn't been an easy road for her parents, but they say they wouldn't change one thing about her life. Good luck and God bless you all.
Elaina in NJ

Hi K.,
My name is Cherise & I have custody of my 8 1/2 yr. old grandson whose had hydrocephalus since birth. He was checked every 3 months by a wonderful & very well known neurosurgeon for 2 yrs. He had a perfectly clean bill of health with this issue & 2 months after his final visit the fluid became worse & we almost lost him! He had emergency surgery immediately & with God by his side recovered with no reprocussions from this very tramatic ordeal.
I am by NO MEANS trying to scare you which I apologize if I already have. The Dr. told me that in 20 years of practice he never saw it change so rapidly or at all for that matter after a year of examinations no less 2 yrs. It just happened! He also has a seizure disorder...which is a completely different medical issue & has nothing to do with his hydrocephalus. He has a VP shunt that drains the fluid from his brain through a tube that empties it out through his abdomen . It is permanent & may need to be lengthened in time or may not . It does release the fluid therefore causing no pressure on his brain.
Everyone has different reasons & circumstances so advice should come from the Dr. you trust & one whose confident, competent & explains EVERYTHING you may want to know. NOTHING is too trivial to ask. This shunt that he has is placed right under his skin & starts in his abdominal area & runs up his chest,neck, & head to a reservoir that controls the amount of fluid going in & out of his brain. AMAZING!!!This may not be what your baby needs so ask,ask,& ask questions & research & get second opinions. I did all of this ...after all it's YOUR baby! My heart & prayers are with you & PLEASE if you would like to talk or ask anything email me at ____@____.com for the record I travel an hour & 1/2 to Rochester & would travel a day if need be to Strong Memorial Hospital for my grandsons neurologist & neurosurgeon. They saved his life & are excellent Drs. and facilities if you wanted a second opinion. Remember we are all human & the final decision is yours!!
I very rarely answer to or look at Mamasource because I get to involved, but my daughter sends me the ones she thinks I could be of some help to...so here I am ! Hopefully it does. The downfall for me is that I never know how things turn out & I think it would be nice to hear once in awhile. If you would I would really like to hear just a short message of how things are.
God Bless,
Cherise

don't panic. my daughter was diagnosed at 5 mo. with this.. but when i went to see a very good neuro.. it was wrong..she just had a big head. she had an ultra sound to confirm that she didn't have this.
my cousin has 3 children with this.. and they just watch them. they didn't need surgery.. and one of her kids is now in college..none of them ever needed a shunt.. so think positive. so don't panic.. go see a good dr. and check it out.. good luck

K.--The good thing is that it was caught early. Had it not been, she would have been prone to seizures and learning disabilities as the fluid built up. Now that it's been diagnosed, they will put in a shunt (tube) to drain off the fluid. It may have to be changed occasionally as she grows, but overall, she should be totally fine. Do you wish she didn't have it--of course. But since she does, just get the best doctor you can find (sounds like you already have) and do what he says. She will be a normal, healthy little girl.

HI K.
I am so sorry about your daughter. Please know that I will be praying for you and especially your daughter. God is real and He is there. Draw near to Him and He will draw near to you.
You are probably in shock, about all of this. It is not unusually as we all go through stages with bad news.
I can tell you some good news. As a young mom my dear friend had a son who had hydrocephalus. We moved just before he was diagnosed so I don't know all the details, but I can tell you that today he is a career military man.
God bless you and give you hope and your daughter healing.
Please let us know what is happening OK. Since I am old enough to be your mom, I am hoping that your mom is able to help you through this, remember to talk to her.
K. === SAHM married 38 years ----- adult children 37 coach, 32 lawyer married with 6 mos old, and twins 18 and in college after homeschooling.

K.,
You've read it: excessive water on the brain isn't good.

Likely you've read it: a shunt implanted will help drain the water away.

There are a whole bunch of horror stories and success stories to go with all that reading.

Bottom line - she won't get better untreated.

Go in armed with information AND questions. Get all of your answers up front. Find out where you can get more information if you don't quite understand something.

Don't freak out. Get informed!

Also: find out what to do when the shunt gets plugged (and very likely it will).

Learn infant/child CPR and what to do (and not do) if your baby/child goes into convulsions.

The more informed you ARE, the less you will freak out - which is what your baby needs most from you.

Also: be careful of hydration. Don't go over. Don't go under. You'll know what I mean awhile after she's had her operation.

I would be happy to know how your little girl pulls through with this.

Blessings and prayers for your little girl! I think she'll turn out okay after surgery. :) She's got a concerned Mom!

Take a deep breath, and research only short time during the day (this includes sleeping time!) You will not help anyone by being short of sleep during this time (well, beyond normal waking up for baby at night!)

Good luck!
M.

Dear K.,
Hi dear my heart really goes out to you ...you have a full plate...I too have a daughter whom was diagnosed with hydrocephlis 21 years ago...She is a fighter,back then I put it all in GODs hands...she had a 3 3/4 grade of a bleed she has a VP-Shunt today and has gone through many revisions...today I can tell you hang in there its well worth it...she has a high school deploma..,dancing,singing,reading,things are great,I look at her so much and just smile and say to myself wow we did it fought the hard fight and won and continue to win. Patience,along with LOVE lots of LOVE...the two of you will be just fine. Your Friend P.

Sounds like she will probably need a shunt. You have the
top medical people at your fingertips, so I am sure
everything will work out fine. Good luck and God Bless.
Keep us posted.